Surprise! 5th Birthday

It has been years since I have updated here.  For anyone still checking in or receiving notices I wanted to again thank you for your prayers and support during our difficult first year.  I have writer's block that I can't fully explain.  Part of it is because it's Ella's story, not mine.  I'm sure I have a few mental blocks from our experiences as well.  Time is always the key factor... 

But she is FIVE!

Ella is finishing her second year of preschool and preparing to head to kindergarten in the Fall.  She loves music, books, animals and being silly.  She has spastic quad CP.  This means she needs support sitting, standing, walking, eating, dressing, and is non-verbal.  She also has Short Bowel Syndrome (SBS) from her NEC surgeries.  She still has a g-tube for her nutrition but she does love to eat soft foods. 

Here are some pictures from her super-fun birthday party over the weekend at a local little "zoo". 

And for those of you who have reached out to me... thank you!  I'm sorry I have not responded to everyone individually.  My email has been littered with spam and if I don't respond immediately emails get lost forever. 

Perplexed

We saw Ella's Developmental Pediatrician (DP) a couple of weeks ago.  Based on that visit, along with my list of questions for the doctor, we have a laundry list of action items over the next several weeks.  I'll skip the various debacle of clarifying orders and scheduling only to tell you to have a clear understanding of the tests the doctor wants before leaving her presence and question everything as it is scheduled, even if it is a pain in the ass.  

My goal for all of this is to make sure that our current action plan (Weekly: PT2x, OT2x, CBRS/MT 1x, ST 1x; Monthly: VT1x) is the best plan for Ella's needs. This not only involves the frequency of her therapy visits but also the focus.

At the same time our OT who has been with us for 18 months told us she is moving to a new job. We are sad to see her go but open to new perspectives a new OT may bring.  I investigated clinical OT a bit but was disappointed in response time and scheduling availability.  I decided to go with the home therapist recommended by the company our previous OT was with but after a week had not been contacted by the new OT.  I got a call tonight from the 'clinic' owner stating the new OT decided home therapy was not right for her.  Now I am back to trying to find a new OT, the 'right' OT while trying to make sure the gap in her therapy is as small as possible.  This is our first week without OT, hopefully I'll have something new scheduled for next week.    

Ella had an EEG last week. While she wasn't crazy about it, she did better than I expected, with LOTS of singing and diversion techniques during the long wait with the prongs all over her head.  No results are available from that test yet.

Next Tuesday morning Ella is having a MRI.  She hasn't had one since she was 3 months old. Given her continued delays her DP and I want to compare against her baseline. 

Today, in addition to her ISFP review which occurs every 6 months, Ella had a Speech Evaluation, as ordered by the DP.  

Speech has been becoming a sore spot with me for the last month or two.  All of our other therapists have continued to ask what ST is working on... well, she is working on feeding.  It took me quite some time (back in NICU days) to figure out the correlation between Speech and feeding and why ST's were visiting us focused on feeding when she was just a few months old.  Now I do understand that there is a direct relationship between speech communications and feeding - how you chew, swallow, move your lips, jaw/teeth independently, move your tongue to shift the food in your mouth, etc.  

Several months after coming home from NICU, we went through 2 other ST's (quickly) before finding our current ST... I'll call her ST3.  ST3 comes once a week for 20 - 30 minutes and generally observes us (me and/or Nanny L) feeding Ella. She has helped us with ideas of new foods to introduce, where to place the spoon, how to introduce a straw, how to support her jaw.  She was key in providing tips for me to figure out how to stop needing our painful WIC appointments to get Ella's expensive specialized formula and get a Rx to have it delivered to the house instead - a HUGE win! She also advised me to reapply for respite care last summer which was actually approved just this afternoon... 

All of this said... she's never been 'hands on' with Ella like her other therapists.  Until recently Ella would get upset when she arrived at the house, even though Speech is by far her 'easiest' (not demanding) therapy, watching us feed her and offering tips.  Ella is quite the babbler, she makes clear choices and lets me know when a song she doesn't like needs to be changed on the iPod.  She understands a lot and is trying to communicate more and more.   Ella will be 2 in less than 5 weeks...  she's been doing some types of communication (mimicking back "I love you" for the better part of a year).   Her other therapists have helped guide me in all of these things in addition to using signs, but for Speech Therapy, all we focus on with ST3 is feeding...     

With the questions being asked about ST from our other therapists I began asking ST3 about other interactive ways of communicating.  I'm the parent… I don't know what to expect with ST, what the various approaches are, that's why we have therapists, to help guide us through the type of work we need to do with Ella to give her every advantage to conquer her delays and meet milestones!  

ST3 answers my questions by saying we can do play therapy to incorporate speech/communications but then drops it.  I had to be away from the house yesterday but asked Nanny L to have ST3 start the play therapy during her session that day.  Nanny L reported back that ST3 seemed off-put and indicated she needed to do a new type of evaluation before she could do that due to billing codes (never information offered when I asked about other ST approaches previously).  

So... based on our DP's orders, we had a new ST evaluation today, in clinic nearby.  Ella was evaluated at 3 -9 months communications with 9+months comprehension (of instructions).  Remember, Ella will be 2 in a month!  When I explained what type of ST Ella was receiving today... 20-30 minutes a week, feeding focused, the evaluator was trying to keep her jaw from hitting the floor (Nanny L later kept referencing the look on her face).  The evaluator, I'll call ST4, wants to see Ella for 45 minutes 2 times a week for play/interactive communications therapy.  

I really like ST3... but I know it's not about MY relationships.  It's not about my desire to avoid conflict/confrontation.  It's about what is best for Ella.  I need to let ST3 know that we are taking Ella's ST in another direction.  I also know that I am not committed to ST4... but we will give it a try and wait until we can get the videofloura (another test ordered by DP to be followed through by ST4) and then reevaluate from there.  

On a happy note, we are about to hit 6 months with Nanny L!  She has been a blessing for carrying through with Ella's therapy homework throughout the day, every day during the week.  She is such a big reason Ella is doing so well… 

At the same time, with her 2nd birthday coming soon, Ella still looms at under a year for all of her developmental milestones.  But every day she works very hard to make progress.  

Two weeks ago she started counting… she will grab your fingers that you put in front of her face when you count (typically with a song) 1-2-3-4-5…  This is HUGE!  I attribute this to her music therapy based on what we have been working on over the last months.

She will also fist bump as a form of celebration.  She will put her hand/fist out to you (upon prompting) so you can bump it and go "boom".  I've taught her this in the last week or so… she really gets so much… she is just trying to get better muscle control for among her arms/fist/grasp more accurately.  That comes with increased trunk strength.  

We just found out yesterday that Ella needs glasses.  That's another blog post… but I'm working on getting the proper measurements so we can get a good pair ordered for her.  That will probably help with her depth perception.

Pictures are still on my phone.  I'll have to update the post (or a new one) with pics later. 

My Tubie's Tube - A Love/Hate Relationship

It is Feeding Tube Awareness Week.  

I have missed posting on so many different Awareness Week's that we are impacted by in recent months.  So many other very important Awareness Days & Weeks.  Honestly, for this post, the timing just worked out, between my thoughts and a little bit of time to jot them down.

***

I HATE Ella's G-tube.  I hate that she needs a feeding tube.  I hate the constant nagging worry, every second of every day, that her tube will inexplicably come out, unnoticed... requiring a STAT trip to the ER and possible surgery to replace the button I hate.

I HATE that in nearly every touch I have with my child... every time I hold her, hug her, I subconsciously feel her tummy to make sure her button is still where it is supposed to be... where it is NOT supposed to be, attached to her.

I HATE that I know her trouble, to this day, with tummy time has to do with that button on her tummy.  After she has had time on her tummy I will pick her up and she will have red mark indentations on her tummy like someone who is wearing too tight jeans.  Can you blame her for not wanting to spend a lot of time on her tummy?  For not wanting to crawl, dragging negative friction against the button stuck through her stomach wall?  

Is this the reason why she is so delayed developmentally... because spending time on her tummy to work her core strength, her upper body strength, her lower body strength, because it causes her discomfort?  

I don't know, but I suspect it is to blame more than the professionals do... they say it makes no difference... I KNOW that it does. 

I hate that it's next to impossible for me to get a "random" (not her nanny) sitter for an evening or weekend because I can't be gone more than 2-3hrs max (depending on when I would leave), as she may need a bolus feed every 3 waking hours.  

I LOVE Ella's G-tube.  I love knowing that regardless of what she accepts in her mouth that I can ensure she gets her nutrition, hydration and medicine.  I LOVE that she does not need continuous feeds delivered throughout the day/night via a pump tied to a pole/backpack.  I love that I don't have to wake her to give her medicine (which is too often during overnight hours)... 

On a side note, I also LOVE that when I do wake her if I didn't put her to bed with her button extension inserted and tucked into her diaper tape, that she will wake slightly, look at me with a recognition and acceptance only for me and drift right back off to sleep (90% of the time).  

Whenever I bring on a new nanny or even sitter, I keep a spare button set to show them how it works.  I think that understanding that there is a little bubble of water inside her tummy that keeps the button in place helps caregivers feel comfortable with the foreign object on her tummy.  I orient caregivers that the button is fine, they don't need to worry about it but they need to be aware of it.  I tell them that it wont come out... but if it does, it is an emergency situation.  

I have intended to make my own video showing how to bolus feed Ella but have never had enough hands to do it - when thinking about it.  One of these daya, maybe I'll do it.  On the other hand... maybe we will be done with the tube before I ever get around to it.

Ella is eating well... chicken, baked potato, cottage cheese, mac & cheese (a whole shell).  She is finally taking (some) of her bottle from her nanny and even her snow-sitter (aka, occasional sitter), I just can't get her to drink more than an ounce or two from a straw/sippy cup.  My new mission is to get her off bottles and drinking enough volume from straw/sippy cups... while I've read a ton and have weekly Speech Therapy to help, I'm certainly open to any ideas readers may have on this topic.

A newfound way Ella enjoys tummy time (in her new playroom)…. Watching Baby Einstein's Baby's First Moves video, her favorite (and only) video she loves! She will even sometimes wave and roll along with the babies on the video!

Snow day in Charlotte today

Mommy thought she had a great idea for a makeshift sled… infant tub on a picnic blanket. Not so much, says Ella.  Creative ideas for sledding with a child who doesn't quite sit independently?

Happy New Year!

I've been wanting to knock out a post before the craziness of tax and consignment sale preparation take hold.  Actually, I still need to write Christmas thank you notes...

So a blog post it is!

Now that it is 2014 I am able to say it out-loud (or in writing):

WE STAYED OUT OF THE HOSPITAL (ADMISSIONS) IN 2013!  

Can I get a Whoop! Whoop!?

We may have to lead a boring, restrictive life at this time, but it is SOOO worth it!

DEVELOPMENT

Ella is still making good progress in her development.  This is such a blanket statement... what does it mean?

Ella is making progress to those who know her best (her mommy, nanny, family and therapists) and to those who don't see her often (friends).  

The progress wouldn't be noticeable to someone not invested in paying attention. 

Sitting

Last Spring I was certain she was close to sitting independently...  she is still not sitting independently.  She can prop sit, shift her weight from one side to another (a bit) and even sit without using her arms, for 30 seconds to 3 minutes.  You just can't leave her unassisted for the moment she topples over without trying to catch herself.  

Rolling

Ella's trunk strength has improved dramatically.  The connection between her hips and trunk is still not 100%.  She will now roll unassisted from tummy to back BOTH DIRECTIONS when she wants to do it (more and more often).  She CAN roll from back to tummy but is not motivated to do it yet.  A small queue on her hip will get her to fiip that way.  This is big progress in the last few weeks!

Crawling/Walking

99% of the time I (or nanny) am on the floor with her.  The thing that is hard, but good for her is to get her settled on her tummy and walk away for a minute or two.  She gets pissed off and MOTIVATED to move!  

Ella bears weight on her hands & knees well with some support.  She has recently tried to reach forward and move her legs at the same time, but I have only seen this a few times in the last few weeks.  

We did just buy our first pair of shoes (SNEAKERS) to use with weight bearing exercises in preparation for standing/walking!  It's a long way off but the exercises to get there are well underway.  

Grasping/Visual Motor/Cognitive

Our OT just did a re-evaluation this week, she measured 7 months in Gross/Visual Motor skills.  Ella is much stronger on her left side than her right side.  The connection between her body and brain is stronger on the left.  Her hand has opened up on the left.  

Ella understands simple commands.  She knows what to do when you tell her to 'turn the page' and is just getting past the stage when all she wants to do is turn the page when reading a book (story, who needs a story when I can turn the page!). 

SBS/Feeding

We saw the GI this week and he told me that while she is a SBS child he is now seeing her more for her oral aversion than SBS.  I was pleased to hear this because 1) she is making good progress with her eating and, 2) she is doing fabulous for a child missing a large amount of her intestinal tract!

We still struggle with BO (Bacterial Overgowth) which requires a routine cycle on/off antibiotics.   This is very typical of people missing their ICV (Ileocecal Valve - I still have to google how to spell that), the valve in your intestines that keeps the bad bacteria from your colon from going back into your small intestines.

Ella is doing a good job being open to new textures... adult oatmeal, baked potato, rotisserie chicken, yogurt, veggie sticks, mum mums, etc.  She still prefers Stage 2/3 baby food.  Her favorite changes every few months, currently it is Pumpkin & Spinach.  

I have been a bit afraid to introduce more foods for more reasons than I can't get into right now.  It's really difficult to figure out if a SBS child tolerates these foods.  After this last GI visit I feel ready to begin introducing more table foods. I'm just happy that she is open to new textures and chews (she likes to watch me eat something first).  

We actually shared a dinner plate tonight for the first time.  Rotisserie chicken and steamed Cauliflower!  And, of course, Pumpkin & Spinach puree.  

Ella still takes her bottle primarily, along with tube.  We continue to try a sippy/open cup which she will use, but not take a large volume.  We are going to reintroduce the straw cup to her... She has just started to take a bottle from Grandma and the nanny (anyone other than me) for the first time since last June - when she feels like it, that is.

Sleep

I do not discuss this subject because if I do I PAY for it! Let's just say, I can't complain (unless I discuss it).

LIFE

Ella is 21 months old.  On a Gross/Fine motor skill scale she's 6 - 9 months old (as best I know at this time).  Cognitively I believe she is a bit ahead of that.  

Her favorite (most consistent) word is 'hi'.  No is also a frequent word.  She still says 'ma' sometimes.  She says 'dog' on occasion.  She babbles a lot, especially if I am talking/on the phone (if the nanny needs to leave early and I'm still on a work call - she talks up a storm while I have to talk).  

I still use the infant tub to bathe Ella.  I'm looking into our next stage options.  I really think I want a bath ring although I understand they are controversial.  For Ella's needs I think it is the best option (better than a laundry basket or inflatable tub).  While I will never turn my back to her during bath time, I sometimes need 2 hands for 5 seconds (to get her conditioner or towel).  I just feel like a ring will be better for her as she can sit but not 100% unassisted.  Thoughts?

I'm still very dependent on our wonderful high chair.  I had no idea when I bought it (at consignment) how well it met our needs.  It has wheels on all legs that are 360 degree rotatable. I didn't realize how great it was until Christmas when I borrowed a high chair with wheels (turns out wheels were only on the front and only went front/back, didn't swivel).  

The high chair gives us both freedom to move around the house without me having to hold her constantly.  It allows me to bring her with me to run to the potty... to take a shower... to prep her bottle/food.  Think about it.  Otherwise I have a 21 month old child that I have to have a clean, soft surface to lay her on in order to set her down anywhere in the house!  I LOVE our high chair!!  

We went to FL for Christmas to visit my family - my first time back in 2 years, since I was 10 weeks pregnant!  Grandma flew up and made the trip with us, which made it MUCH better (26+ hours round trip)!  We had a great time playing on the new swing at Grandma & Grandpa's house.  We enjoyed having a few meals on restaurant patios.  Ella met many friends and family for the first time.  We even got to the beach, although the water was too cold.  

Our nanny has been with us for a little more than 4 months now and we still LOVE her!  I will attribute much of Ella's progress to her consistency in following-through daily with all of our therapy exercises. And she is as much of a germ-a-phobe as I am, which is nice to have someone here who "gets it". 

Grandma went in 2 weeks ago for minor bone spur surgery on her shoulder.  Recovery was supposed to be: 1) a sling for 24 hours 2) PT for 2 weeks.  Turns out their was a rotator cuff tear.  Recovery will now take months.  We are all thankful that she waited until after Christmas to have the surgery (surgeon wanted to do it before)!  She seems to be doing well with her recovery already.  She sees the doctor next week to map out her revised recovery plan.

I'm sorry I'm such a bad blogger these days.  Besides finding the time to blog, I have not found the motivation... I want to blog (I compose posts in my head every day), but I struggle with what to share.  This is Ella's story now.  I want to share, document our story and blog to help other micropreemie and SMC moms but I have not figured out how to do that while balancing Ella's right to privacy.  

Christmas Picture!

Christmas Picture - nice prop sitting, weight shifting!

The swing in Grandma & Grandpa's front yard!  Swing! Swing!

On the beach (with my 2 oldest friends), reading our favorite book. 

SuperGirl!

Nanny L and I held a little pre-Halloween photo shoot of SuperGirl.  I am holding off on sharing the photos until tomorrow... except here.

A full view of her Super Girl costume.
She is wearing boot covers, notice how huge the feet are.

Location 1: Front porch.
Note the awesome carving job on the pumpkin in the background! Go Mommy! 

I'm not so sure about this costume...

Maybe it's not so bad.

Love that tongue.
Her Speech Therapist doesn't love it, but isn't she so cute?!?!

Can you say A-D-O-R-A-B-L-E?

Close up.

Love this one. While you think she is just laughing (she is), she is also falling over.
Nanny L's hand has been cropped out of the photo,
the hand that thankfully grabbed her 1/2 second after the shutter clicked.

Location 2: Side porch.

What the heck are we doing here?  No. It's not going to happen!

Nobody puts Baby in the corner - said because it had to be said.

Frightened SuperGirl?

SuperGirl Selfie.  Love this!

Adding the micropreemie spin to this post, notice that she still needs some support for sitting upright (Nanny L's hands or propping in the corner).  We start with a trial use of the Wunzi on Friday (her PT just texted that it arrived at her house tonight).

You know what is awesome?  Her eyes are NOT crossing in these photos!  Hopefully that means the patching 3 hours a day is working and we can avoid another surgery....

Happy Halloween!

Order

I have some very happy news to share!  There is a new nanny in the household. Let's call her Nanny L.  She is long-term (intended) nanny who is fabulous with Ella.  This is her 4th week with us and we have O-R-D-E-R in my household!

At Brunch with Grandma & Grandpa.  Her T-shirt says "My Mom is a Rock Star'

Nanny L is young, like all of our previous caregivers.  While young, she is very responsible.  She actually got her CNA in high school and is working toward her RN (with a desire to work in Peds/NICU). She has worked with special needs kids, therapists, as well as in other nursing-care capacity roles.

Nanny L has the wonderful ability to delight Ella, manage her needs & therapies and keep up with the every-day household needs.  She and Ella clicked from the start.  Grandma was actually around to help out with training during her 'trial day'.   Nanny L picked up on everything quickly.  She takes initiative so she's not just sitting around until I give her something else to do.  She stays on top of Ella's laundry (washing, folding AND putting away). She actually changes the crib bedding when it needs it! She keeps the bottles cleaned and even loads/runs/unloads the dishwasher.  I joke that Nanny L now manages the house... in a way, she does!

She works on Ella's physical therapy, occupational therapy, speech, vision and music therapy homework throughout the day.  She stay's on top of Ella's eye patching (3 hours a day).  She is an active participant during therapy.  She is extremely interactive with Ella, ALL DAY LONG!  

With Nanny L during Music Therapy in the front yard

Actually, since Nanny L started, Ella has been going to bed earlier and earlier.  While I had been trying to get Ella to extend her bedtime until closer to 8pm, she's going to bed shortly after 6pm lately.  And Ella still sleeps 11 - 13 hours a night!  *Ella's naps have still been hit or miss - especially short during the cutting of molars.

That does mean I have less waking time with Ella on weekdays, but I also know it means that Ella is fully stimulated during the day. 

My evenings have been open to catching up.  I planned and coordinated Ella's Homecoming anniversary party (which was so much fun).  This is my SECOND blog post in 2 weeks!  I've also been catching up on reading some blogs again.  The dogs are getting out for exercise most afternoons (we have a dog-weight problem). I subscribed to Netflix so I could watch Homeland (so cool to watch scenes filmed in my neighborhood, office lobby, etc).  Now it's Fall TV premier season, my DVR is getting a workout but i am catching some of my favorite shows.  Oh, I've even started working out after Ella goes to bed (not every night, but it's a start).  

Oh, the grandparents were in town this weekend.  Besides our fun activities, including a trip to the Pumpkin Patch, I got to go to a real adult party on Saturday night.  I can't remember the last time... I had such a good (adult) time!  

Mommy, did you sanitize these pumpkins before setting me down?

She's so close to sitting independently.  

I guess Nanny L makes me feel like I have a partner, in a way.  And most importantly, she adores Ella.

Grandma & Ella at Discovery Place

Grandpa & Ella (and the patch)

One Year at Home!

Wow! It has been a long time since I posted.  I've posted frequently in my head... those posts just never make it to publish.

Tomorrow will mark Ella's 1 year anniversary of her discharge from NICU and finally coming HOME!   A year ago tonight was our her last night in NICU.

164 days.

That's 2 weeks shy of SIX MONTHS.

With the exception of those 2 weeks over Christmas last year, we have stayed away from the hospital (knock on wood)!

Nearly six months of not having my baby at home.  Packing up my pump, laptop, notebook each day to spend hours upon hours at her bedside.

Not knowing what the day will bring. Will I get to hold my daughter?

2 days old - first time I held Ella

Will she have any breathing episodes?  Will she have any heart rate drops?

What tests will be run today?

First x-ray after her bloody stool, leading to her NEC surgery

What is her direct bilirubin level this week?  Will she be allowed to eat today? How much will she be allowed to eat?  What is her weight today?

Ella on her actual Due Date 7/21/12

When will she be able to wear clothes? Does she have another ROP exam today (if you never watched your child go through these exams you have no idea how lucky you are)? Will she need another surgery (Please God, NO!)?


Will the doctor come by while I'm pumping and I'll miss him?  Am I really THAT hungry to walk all the way to the cafeteria?

My view down the NICU hall from Ella's space at our 2nd NICU

Am I really that thirsty to have to leave NICU to have a soda or water and have to wash my hands for yet another 3 minutes before I can get back to Ella's bedside?

When will it be our turn for the car seat test?

Car Seat Test - a NICU milestone that occurs shortly before discharge

When will the doctor even entertain discussing DISCHARGE?

164 days of NO CONTROL. Few answers.

While it was a tough adjustment (putting it mildly) when Ella came home, due to her medical needs when she first got home - there are so many luxuries to being home with your baby, after so long in the hospital, that I am still thankful for today.

We're both HOME... together!

Besides being thankful for bringing your child home from the hospital, parents with children who had long NICU stays are thankful for the little luxuries of home that most people don't think about...

Ella is home and I'm...

• barefoot!
• braless!
• in my PJ's!
• watching TV (the news, a football game, a movie, anything!)
• with my dogs!
• having dinner/wine!
• able to go to bed and still get up with her in the middle of the night (she sleeps through the night now, but this was a luxury in the early days)
• able to clean my house.
• able to take Ella for a walk whenever I want

I know I'm forgetting many luxuries... we've been home a year!  Help me out NICU families... what luxuries were you so happy to have because your baby finally came home?

When a child is born a micro-preemie, it doesn't end when he/she is discharged from NICU.  Homecoming is a next step (a GREAT next step) in her story.  This year has been a wonderful year of adjusting, balancing, enjoying, being and LOTs of therapy!  She works hard every single day to do things that come naturally to most.  That's another post.

Ella (courtesy of Grandma) in late August

Brief Snippets of our Current State

I'm having blogging withdrawals.  I don't know what will come between the beginning and end of this post, but I need to post. I miss having the ability to spend time writing and editing... this will be another quick & dirty post.

First 'normal' illness

Ella and I ended up with a respiratory virus a couple of weeks ago.  The only source I can nail down is Nanny J.  Thankfully I handled it okay, I only had one miserable morning several days in and felt like a new woman by the afternoon.  Ella came down with it the day after my miserable morning.  It was a little pitiful as she wanted to self-soothe by sucking on her paci but she was so stuffed up she couldn't breathe and suck her paci at the same time... but it took her quite a while to figure that out, and it made her unhappy.  We had a few rough nights but overall she handled her first 'normal' illness quite well.  I'm so thankful I still have our Nap Nanny.  I know it was recalled but I will not change my mind that it is one of the best purchases I've made for Ella, so versatile and the ONLY reason we slept at all those few rough nights (elevated her stuffy head). 

Bottle Feeds

I've said for quite some time that Ella has a love-hate relationship with her bottle.  Back in May the new GI started treating her for silent reflux, because while she didn't show signs of reflux, she had multiple risk factors.  When we started the EXPENSIVE (non-insurance reimbursed) compounded medicine she quickly showed improvement in her bottle intake (by mouth).  Our speech therapist - who has been a wealth of information since we found her - told me that other parents on this medicine have complained that it looses effectiveness toward the end of the bottle.  The $80 bottle lasts less than a month and about 3 weeks in, sure enough Ella would refuse her bottles.  She'd cry whenever I got the bottle near her.  Once I bought a new bottle she enjoyed her bottles again.  

One of the best sources of information is the various Faceb.ook groups that I'm part of related to Ella's diagnosis.  I had read that some children were on Prevacid tablets  instead of the compounded reflux medicine.  This was not on the top of my priority list for some time but I finally got around to calling the GI about it a few weeks ago - toward the end of our 3rd compounded bottle of medicine losing effectiveness.  

They called in a Rx for Previcid solutabs.  We started on 1/2 of a 15mg tab daily.  I couldn't tell a difference, but then, she started to get sick so I couldn't really tell what was causing the problem.  We had our 2nd appointment with the GI on the 15th and it turns out the dose was too low for her size.  We went up to a full 15mg tab daily... but, I was having lots of trouble getting it to dissolve and put it through her g-tube without clogging it up - so there were several days where I questioned how much of the dose she got.  Dealing with a clogged up g-tube first thing in the morning (spending 30 minutes+ trying to unclog it) was not a way I wanted to start every morning.  

I reached out to the FB group again for suggestions on how to give the medicine.  So far it's been better using cool water (you would think hot water would dissolve it better) and breaking the tab in half, using 2 syringes of 3/4tsp cool water to mix and administer.  

Seriously, these details will drive you nuts!

Anyway...

Had Ella not had her g-tube she would have been admitted for dehydration the week she was sick.  She didn't take a bottle at all from Tuesday - Tuesday.  She took ONE partial bottle on Tuesday (from Grandma, much to my surprise) and didn't take another partial bottle until Saturday night.  Monday night she drank an entire 165ml bottle!  It has been 2 - 3 months since she's drank a full bottle (and longer since the one before).  She has drank at least a partial bottle at every feeding since (4x's/day)!  This is huge!

Puree's 

Ella continues to enjoy her puree's.  She only lost her appetite for them while sick for a couple of days.  We are up to these feedings 3 times a day!  She still is not crazy about her fruits but she has enjoyed pears a couple of times.  I did even try a real banana the other morning, which she did okay with.  She LOVES her squash and chicken with sweet potatoes.  She will eat between 5 - 8oz of purees a day.

Overnight Feeds

Because of the increase in eating purees, I have decreased her overnight feeds.  She basically gets the equivalent of one bottle over 3 1/2 hours.  One day I'll write about the tedious details of setting up/unhooking overnight feeds.  It's not a big deal, it's just a lot of precise lessons learned about how to do it while making minimal noise carrying the awkward, heavy IV pole with the pump, feeding bag & ice pack and learning exactly where to step for minimal floorboard creaking. And of course, how to prep the line/extension so you don't stay up all night worrying your child will tangle and strangle herself in it.  Little things like that.

Childcare, oh childcare

Our Nanny troubles have not ended.  Last Monday, Ella and I spent WAY too long at the new GI for our follow-up.  At 11am we were finally checking out from our 9:30am appointment, which means I basically missed a whole morning of work.  I texted the nanny that we were checking out and would be home shortly.  She texted back that she was at my house but didn't think she could work that day.  

What?  Why?  And why are you waiting until late morning to tell me you can't work today?

I texted back that I really needed her to work, she said we would talk when I got home.  When I got home she said she didn't think she could give Ella her best (based on circumstances I'm trying not to share).  I told her that I really didn't care about her best, I needed to know if she could give Ella the minimum necessary to care for her... apparently not.  I told her to go.  

I began to call the handful of people I have for last-minute back-up care.  Two were out of town for the week.  I got one available, but not until late afternoon.  I called my mom - who dropped everything and was packed and on the road within an hour to help me out - since I didn't know how long the nanny would be out or how trustworthy the nanny actually was?  Thank God for Grandma!!  She ended up staying with us til Saturday!

In the meantime, my boss was not hiding the fact that she was pissed that I had yet another childcare issue.  Honestly, I'd be pissed with me too.  Even though it's beyond my control, it's bordering on excessive.

The one thing about having an AuPair, I didn't have childcare issues.  In the 5 weeks since the AuPair had left, I had multiple childcare issues - most of them without notice, putting me and my ability to work in a bind.

And our doctors continue to reinforce that Ella cannot go to daycare, it's not an option.  So my options are limited.

I'm trying to balance the nanny's privacy with my right to share the impacts to our life... and the fact I'm still pissed at the position she left us in.  

Basically there were some long-standing mental health issues that I was unaware of that surfaced.  Background checks on nanny's don't check mental health stability.  

On Tuesday the nanny came by the house unannounced - REEKING OF SMOKE - with a doctors note "writing her out" of work for the week, along with giving her 2 weeks notice.  I told her that I would find back-up care for that last week.

Later, I realized she still had my house key.  I texted and asked her to drop it off.  She came by Wednesday morning, still smelling of smoke, came in the house and asked to hold Ella.  I flat out refused.  I'm a southern-raised, politically correct person, refusing her was huge!  And absolutely the right thing, she never should have walked in the house (I didn't invite her in) or asked.

Interim Childcare

I am SO thankful that it is summer!  I have tapped into several teachers to help with my childcare gaps.  Next week I have another temporary nanny starting.  I'll just call her Nanny3.  Nanny3 has a graduate degree in an area related to Ella's therapy.  She is expecting to start with a company expanding to our city in the Fall and needs work to tie her over.  She is extremely mature (as validated by references) and was excited to see how I maintain nanny & household scheduling.  I think it will work out well although I don't know how long it will be for, it will tie us over until September at the earliest, based on our agreement.

Consignment

The big 2x/annual consignment event that I participate in is this week.  It takes weeks to prep: sorting, matching, hanging, pricing, entry into the system, tagging, resorting, loading up, dropping off.  It's all done.  I was going to volunteer this week, which gives you early shopping passes (which is ideal, you get first dibs on what you are looking for)... BUT, with the childcare drama I knew I couldn't take more time out of the office so I cancelled my volunteer shifts.  Thankfully a friend is giving me one of her early shopping passes and Grandma is coming back to keep Ella so I can shop for as many hours as I need (without blowing my shopping savings on a sitter).  This is the sale where I get the majority of Ella's upcoming seasonal clothes. The clothes are in great condition and new to us!

1 year adjusted

If Ella had been born on her due date, Sunday would have been her 1st birthday!

Developmental Pediatrician

Saving the best for last... We saw the Developmental Pediatrician for the first time in the beginning of July.  I was very nervous about this appointment.  Bottom line is she said that at this point she does not see indicators of Cerebral Palsy or Autism!  Wow!  While it's no guarantee, it was so wonderful to hear.  I was actually afraid we would get an official CP diagnosis that day. She believes that Ella's delays are as expected for a micropreemie with her issues and she should grow out of them in a few/several years.

Childcare - Ugh!

Childcare (Ugh!)

I could have also titled this post "Thank God this week is OVER!".

As I considered becoming a SMC I thought a lot about childcare and my support system.  I had originally planned on daycare but knew there would still be tough moments since my family does not live nearby.  While struggling with infertility, when I allowed myself to think about having my baby I thought more along the lines of a home daycare or nanny-share with neighbors.  Of course, those situations could cause significant issues should an unexpected need for back-up care arise.

And then I had a micro-preemie.  And my childcare options were immediately limited to exclusive in-home care.

Let me back up and provide an update.  In June I exited the Au Pair program with about 6 months left to go.  I don't want to go into the details but will summarize... live-in help was not the right child-care option for me.  

As someone who has lived on my own for nearly 15 years, I struggled with sharing my house.  While my house is ideal for a roommate/AuPair situation - the entire 2nd floor is guest space, I bought a TV & installed Direct TV for the AP bedroom - that only works when the other person living in the house wants their own privacy as well. I was "sucking it up" for months and as a result getting moody/bitchy.  I felt like it was impacting the time I would never get back with Ella.

It was a hard decision because AP and Ella loved each other but when I finally decided to be true to myself and told the AP I needed space/privacy, she shut down - wouldn't respond (literally head against the wall).  Shortly after that I learned that I still had a short window of time left where I could recover most of my money from the (remaining) program and decided to let her go.  Thankfully, she found another family to finish out her last 6 months in the US.

Before I made the decision official I put out feelers with our local neighborhood mom's group for nanny recommendations.  I was surprised at the number of referrals I received.  It was good timing as well as I was open to summer-only help, to get us by until I could find long-term help.

I ended up with 2 really great nanny's, one was long-term and the other was summer only.  In choosing, I went with the summer-only (Nanny J) based on my gut.  She is an experienced sitter/child-care provider and an EMT who is waiting to start with Medic this Fall.  She is really good at getting on the floor with Ella and supporting her therapy/homework which is VERY important given Ella's delays.  She was also eager to learn to use Ella's g-tube.

Part of my decision to go with her was strategic as in the long run she could be a good sitter/back-up care option for the future.  Someone familiar with Ella and her needs (although those are ever changing).

On Thursday of her 2nd week of work, Nanny J got sick.  She was perfectly fine and chipper when she got to work but upon coming home from a walk with Ella before noon she was coughing and sneezing.  She said she feared she might have the virus that was going around her house...  

That's enough to freak out a micro-preemie mom!  I sent her home to rest.  I spent a lot of time that afternoon trying to find someone to come keep Ella on Friday without much luck.  During Music Therapy that afternoon I mentioned my dilemma to the therapist and she recommended her sitter, who used to work for her company and is a kindergarten teacher. AND she didn't work for her on Friday's.  I took her number and called her based on that information.

I had to go into the office downtown for a couple of hours on Friday.  As great as the sitter was, all I could think is "I'm leaving my baby with a stranger".  It worked out well and I'm actually trying to get her to come back next Friday for another gap in childcare due to the holiday.

Long story... a tad bit shorter

I assumed Nanny J would be better by Monday.  Sunday night (the weekend is a whole other story I'll never find time to blog about, so just know we had a LONG weekend because I volunteered to do something that was too much for Ella), late I get a text from Nanny J saying she had been better but her fever spiked again.  So unexpectedly I was without care on Monday.  Due to our long weekend I emailed my boss and told her I was taking the day off (as I call it, a mental health day).  

Nanny J thought she would be better to come on Tuesday, so she did, and wore a mask (because yes, I have masks in my house).  I came out of my office close to noon, took one look at her and sent her home.  

Remember, as a 25 week micro preemie, a virus would very likely put Ella back in the hospital.  While I was concerned about the nanny, it's more about Ella.

I immediately started reaching out to contacts to try to find someone to watch Ella on Wednesday.  I had to be back downtown for a few hours, plus I simply needed to get work done.  I've been up late every night this week trying to catch up on work that i have not been getting done because I've not had childcare this week.  

Unfortunately, what this experience has taught me is I do not have a good back-up care plan in place for Ella. I contacted at least half-a-dozen people.  Everyone has plans/a life.  Even if there was an option to drop her off somewhere, I can't just take her somewhere because 1) she wont eat for anyone but me  2) since she wont eat the caregiver has to know/be willing to use her g-tube. Since I don't have anyone on my list that fits these needs the alternative is the caregiver needs to be in my house, since I work from the house (with a few exceptions) and can jump out of my office to feed/tube Ella when necessary.

I ended up having a not-yet-well Nanny J come back on Wednesday to keep Ella because there was no other option.  I had to work, I had to be downtown for a few hours as well.  Sometimes in your work there is more pressure than normal to perform... this is where I am with work right now.  I need to work, to focus on work.  And taking a risk with a not-yet-well Nanny J was the risk I had to take.

So far Ella and I are okay.  Let's hope/pray we stay healthy.

Thankfully, Nanny J seemed much better today!

So... I have just added a new item to my super-long priority list (which doesn't include blogging but I do this when I can because it is a needed outlet) is to make up a flyer to send to the local nursing schools.  My intent is to have a list at least 15 people long (vetted) who I can call in a pinch for back up care... one after the other until I find someone who is available to help.

In the meantime, my house is a wreck, I have not cooked in a week, laundry is piled up and I'm behind on EVERYTHING.  There has been no time for anything this week except for work & Ella - and work suffered. 

This has been one of those tough SMC weeks... I knew what I was getting into and I love everything about it... but I have been extremely challenged due to the circumstances of lack of childcare this week.

Summer Bucket List (aka Ella & Mommy's Summer of Fun)

About a month ago I saw the 'summer bucket list' blog posts crop up in various blogs I follow.  At first I dismissed it, thinking that it didn't apply to Ella and me given her age and her developmental delays.  BUT... the more I thought about it, the more I realized that it is PERFECT for us!!  I signed right up and started making a list.  

We have our own 'rules'... (if there are official rules I've not taken the time to figure out/read them... we've made this our own)

1.  "Summer" is a relative term. Our list really encompasses our freedom from RSV isolation season.  

Ella spent her first YEAR isolated from the world.  There is a good chance (doctor consults pending) that she will have to have some level of RSV isolation next season as well.  Summer is not simply June - July - August....  it is April through October...  from doors open to doors closed for our lives.

2.  Activities on the Bucket List Can NOT be therapy related

Ella already gets 5 - 6 hours of therapy a week, plus homework daily.  No therapy goals or events are to be a part of our Summer of Fun activities.  

3.  It is okay if we don't do EVERYTHING on the list. 

In particular, as much as I want to take a trip to Florida I just don't know if that one is feasible.  I WANT for us to get down there to visit family and friends (September/October-ish, not July/August - I'm not crazy!).  Riding a horse is dependent on our trip to Florida, my niece is an accomplished rider and has access to a very gentile pony.

4.  We can Add to the List as we desire.  Any suggestions?

Our 2013 Summer Bucket List

• Go to Discovery Place Kids
• Go to a Splash/Fountain Park (done)
• Take a trip to the Mountains (done)
• Go to the zoo (done)
• Go out for Brunch
• Play in the Baby Pool at Home (started, needs some work)
• Have new Professional Photos made
• Swim in an Outdoor Pool
• Go to the Nature Museum
• Take a trip to the beach/Florida
• Take swim lessons (in process)
• Have a Picnic at the park
• Build a Fort
• Go on a Hay Ride
• Ride a Horse
• Host Supper Club
• Have Play Dates with...
• SMC Families (done)
• MicroPreemies
• Others

Goals (and Omegaven on Rock Center Friday)

A couple of weeks before Ella was discharged from NICU the Early Childhood Intervention (ECI) Coordinator met me at Ella's bedside to assess her and to discuss/write goals.  Ironically when she first assessed Ella back in September she said she didn't qualify for Physical or Occupational Therapy because she had not missed her developmental milestones (yet).  

Given that Ella was at such a high risk for having developmental delays that wasn't good enough for me.  I worked with the NICU social worker to get therapy arranged for home.  But I digress.  

When the ECI coordinator asked me what goals I wanted to write up for Ella I really had a hard time with that.  What are my goals for her?  To be healthy and develop just like any other child!  Other parents don't have to write this stuff down as goals.  

• During mealtime, Ella will take all of her food by mouth
• During playtime, Ella will show interest in her toys
• During playtime, Ella will enjoy participating with others and independently reach & play with her toys

Much of this stems from my ongoing denial about Ella's special needs, since that day in the Emergency Room when the doctors & nurses tried to reassure me that having a baby at 25 weeks, usually the worst case is they have Cerebral Palsey.  Well, first of all, I was too drugged up and didn't have my phone or computer to research more about this wonderful worst case scenario they were trying to sell me on for the baby I had expected to be full-term and healthy until that moment.  More about this when I finally write Ella's birth story in detail, another post I have not been able to bring myself to write yet (either due to time or emotional capacity to deal with it).

Most parents can't imagine writing such goals for their baby as I listed above.  I mean, that just comes naturally.  People don't really think about it consciously, I don't imagine (I can't say for sure since I don't have another frame of reference).  Of course parents support their children in learning to do these things and celebrate their accomplishments, but they don't have to consciously think of these things as goals and write them down.

And work with therapists multiple times a week to get there...

Ella has a very good team of therapists assembled now.  We had to weed through a couple for certain specialties but I like her team now.  Her PT & OT have been with us since we were discharged in September.  

This might be a good time to clear the air.  

Therapy is not fun.  It is work.  E

lla used to cry through all of her sessions.  After her line was removed she began to tolerate therapy more, but still had a limit of how much she could take.  

And at 14 months old (this Sunday), she still dislikes tummy time.  She cries through commando crawling.  Sidelying is a form of torture.  

But she is making progress.  It is slow progress.  I am so proud of her, she works so hard every day!  

I came to a point of acceptance some time ago that I am happy with her doing things in her own time because I know she will get there and that it's the right way for her.  She still has to work hard for it, but she can get there in her own time.

That doesn't mean it's not hard for mommy too sometimes.  I feel it more now that we are able to get out into the world and socialize with others.  

At a playdate I'm the one who still has to hold my 14 month old on my lap while younger kids are sitting on their own, crawling and running around.  At Kindermusic or Swim Lesson, my daughter is the one who is over-stimulated and clinging to me, crying through the session.  

And why can't I get through making a matter-of-fact statement to my Financial Advisor that we need to take into account in planning that my daughter may have long-term special needs without feeling that shimmer of tears gloss over my eyes?

I am so happy!  And I am so proud of Ella!  But I do feel occasional pangs of jealousy toward parents who don't have to give these things a second thought.  And that they don't have to write goals for their little ones to eat, reach, grab, show interest in toys, sit independently, crawl, walk, talk... and the many unknowns to come.

Jen, this video is for you... working on sitting independently is NOT fun sometimes.

Rice - sensory play with OT.  And outdoors!  Mommy just wanted to make sure I didn't eat the rice.

Hands & Knees - Hard work.

Hands & knees practice in PT

Grandma watching work on the ball with a PT/OT Co-treatment session

Distraction during PT

OMEGAVEN ON ROCK CENTER FRIDAY NIGHT

It's ironic that at the end of this post I am switching gears to something I am so thankful for in regards to Ella's current state.  You see, as much as I express my feelings of frustration and jealousy above, I know things could have been very different.  If it were not for this wonderful drug Ella may not have survived or would likely be doing extremely poorly and on a transplant list for a new liver and intestines.  

Last June, Ella's direct biliruben levels had peaked at 11.1 (normal should be under 0.2), meaning her liver function was being severely compromised due to the IV ongoing nutritional support (TPN). Right before Ella's 2nd surgery her doctors told me about Omegaven.  It is a lipid (fat) made from fish oil rather than plant oil that has shown amazing results in babies with liver disfunction.  It is not an FDA approved drug.  Our hospital had used it on occasion for other babies and knew how to file the paperwork.  It took about 3 weeks for FDA approval to come through so they were able to begin administering Omegaven to Ella in late July.  

If you recall, one of the primary reasons we had to wait on discharge from NICU was that since Ella was going home on TPN, paperwork had to be resumitted to the FDA for approval to use it OUTPATIENT.  Oh, the hoops that have to be jumped through...  well, after 2 weeks of waiting for a response from the FDA we learned that the paperwork had been sitting on the wrong desk at the FDA and it was being resubmitted AGAIN to the right area.  At the same time there was an Omegaven shortage and Ella would have to switch back to lipids while the Omegaven was unavailable.  

That's when the NICU doctors and I talked again.  Ella's direct bili had dropped so significantly to 1.7, she really didn't need lipids (fats) at all, not the standard lipids or Omegaven.  While Omegaven at home could have benefited her, the fact that she didn't need regular lipids anymore meant that it wouldn't be inflicting additional damage on her liver.  This is when we put in place the very sudden discharge plan for Ella.  Yay!

Ella's direct bili continued to drop after coming home on TPN without lipids.  By December she was under the normal threshhold!  And I credit Omegaven for that... and so much more.

Check out the story on the controversy of why the FDA has not approved Omegaven on Rock Center tomorrow night.  I am so thankful Ella was able to get it, hoops and all.  Like Dr. Puder says, how can you tell a parent so desperate to save their child that they may be in the "control" group of the study and not get the drug that has already proven to help so many?